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02/16/2010 01:38 PM

ok i want the truth!

lishjolene
lishjolene  
Posts: 145
Member

I'm super confusedUnsure...

Do People Get Better When They Have Chonic Lyme Disease?Ermm or are we sick forever??? because i'm really getting upset!

i have talked on the phone with 2 ppl that have chronic lyme and have been treated for years now...

they don't seem to be healthy?! why? they still have many many systoms, why? they don't seem like anything has help them?! but yet they are giving advice about lyme?

I don't know i'm gona have this life long... however i was under the impression that your systoms will get better and that your quality of life will improve????

but why are these people still sick if this is the case?

i was told that lyme doesn't normally kill you unless it effects your heart? i don't want to die from lyme!

i want to feel better!!!! i want to be Better!!! is this ever gona happen? or am i just wasting my time thinking i'm going to feel better someday?

i haven't been undergoing treatment for long .. just since november.

its kinda on hold right (expect for the 1 doxy i take daily) because i got a new llmd.. that is waiting for some blood work to come back. but i would really like to know if when i do start treatment back?

Do people really get better? and why haven't i talked with them? i just want to know the truth!

i'm very scared after talking with these 2 ppl today.. i feel hopeless! anxiety is starting to take over. Ermm

do i have a chance of getting better?

************

broken up by betty since jolene informed her by pm that she has been hitting enter twice for short paragraphs but her system is NOT WORKING correctly; it ends up 1 long paragraph.

leaders; do you know of other folks still where they hit enter for paragraphs & it comes out 1 long paragraph?

Post edited by: Bettyg, at: 02/17/2010 10:29 AM

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02/16/2010 02:54 PM
Jennkat03
Jennkat03  
Posts: 332
Member

Slow down....breathe....

Once lyme is in your blood it will always be there but as I understand it is quite possible to go into "remmision" so to speak and be healthy.

When I originally got lyme I was treated and got better for over a year. Unfortunatly I had a relapse and have just strated treatment again but I hold very high hopes that I will beat it and get back to being my normal self!

Try to stay positive and keep your spirits up. It is possible to feel better again. I know-I did!!!!


02/16/2010 03:12 PM
smoxito
smoxitoPosts: 512
Member

I am about 2/3 better from Chronic Lyme Disease after 3 months of treatment (interrupted by abx allergies & a severe fungal infection). So I would say that you can get better. Many, not all, who are not better have permanent damage to tissues & organs therefore symptoms related would not resolve.

Nerve cells can take 7 years to heal so it takes some time. This is truly "Post Lyme Syndrome" in that your body is still healing but you no longer have Lyme Disease. GI problems take a long time to heal as well.

Those who have beat it seem to have started with abx then added in natural treatments or finished up with natural treatments. Then again, I have a friend who had it for decades and got rid of it with only abx (she has had to take an additional 1-2 months of abx every few years but not continuously.) Her daughter got rid of it in 6 months.

There is hope Smile


02/16/2010 03:35 PM
waxby
waxbyPosts: 4820
VIP Member

~~~Hello Jolene.

~~~The truth is, I don't know the truth.

~~~Except for my self and other long time chronic sufferers.I've had this dis-ease for almost 11 years now.The light at the end of this tunnel is so far distant I'm not sure if its not just an unreachable star flickering light years away.

~~~I've learned after so many years of being so deathly ill not to focus too much on healing Lyme but more on healing my Spirit.Now I know that some who are so sick,including me,say that "you can stick your Spirit where the sun don't shine" and in this tunnel the sun DON'T shine!

~~~If you focus too much on ridding the dis-ease and the dis-ease persists then the greater the dissapointment,thus the further the pain and agony, and the disease scores even more points.

~~~So what in Hades is this elusive Spirit? It is anything except material.Now ,I'm not knocking material things.After all I AM a meterial thing(my body,not my Spirit)and I live in a material world.

~~~I need food to survive and a roof over my head to store it and a paycheck to pay for the electricity to run the refrigerator to keep it fresh and a car to get to my job for a paycheck to purchase these things,and a computer to connect to the outside world-YOU Jolene.

~~~There are endless "things" we can add to the list.But any thing other than the bare necessities do NOTHING for me as I am so ill for so long that I cannot be entertained with stuff.

~~~If all I did was focus on being Lymeless where would there be any real hope? Where would there be any growth and evolution if I never rid myself of this Lyme?

~~~I know there are a lot of you out there thinking "if you keep thinking that way you will be right"(that perhaps this is negative thinking and the dis-ease will not leave).Well all that I can say to that is "TRY THIS!".I have tried that therapy(and related ones).I have shaken hands with the devil(Lyme) and made friends and welcomed it.I think that only encourages it and makes the Lyme more confident in beating me.

~~~But I happen to think my seemingly negative way is more possitive than it may appear-for me.In acceptance of it(sometimes kicking and screaming) I leave it to its devices and go into the "Spirit World" where the Lyme cannot find me, and when I enter this Spitet World more fully,as in death to this body and its dis-ease ,I will have beaten IT and I shall be the winner.

~~~Jolene,I don't want to die either,but I do look forward to it as living like this is all but impossible.My thoughts of death are still with me, as asking God to take me has not proven fruitful.But I do not plan to exit any time soon if I can help it unless "called" to.

I hope to learn more about life and its unanswerable and unreachable and unfathomable mysteries.I take very good care of myself.

I have a superior diet, continue always some sort of protocol such as, for now, Buhner's herbs and MMS,and a Spiritual diet consisting of prayer,

which sometimes comes in the form of curse words,as I'm sure the Great Spirit understands and probably laughs at my feeble attempt at using curse words artfully,creatively and effectively,as the Great Spirit has invented every thing

I could not possibly know the infinite expanse or variety and flavour of His/Hers/It's infinite extensive store house of curse words,or any other thoughts or words to express everything for that matter.

Also,meditation and pondering the universe and the "untouchable",illusive Spirit.

But I will continue to try.

~~~You think YOUR confused?

~~~I still have hope in beating this dis-ease.But my hope for the human race is even greater for the dis-ease of humanity is "Killing us Softly With its Song" (sing it).

And my hope rests more with my Spirit as well becuse this is perhaps the only thing that we take with us.

All this material stuff, including the earth consumed by the sun in some billions of very short years,will fade away-with its dis-eases.

~~~And what will remain?

```````~~~Well,back to my stright jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~it's still there isn't it?~~~Mitchell~~~

Post edited by: waxby, at: 02/16/2010 05:34 PM

mitchell, i broke up 1 long paragraph so we neuros could read this since i'm helping jolene get her posts broken up since her system isn't accepting the doublespaces.

i enjoy & learn from your posts too; wanted to read everything. bettyg Smile

Post edited by: Bettyg, at: 02/17/2010 10:34 AM


02/16/2010 04:00 PM
cmany
cmany  
Posts: 6940
Group Leader
I'm an Advocate

I agree...Breath...

People do get better...sometimes the reason we dont hear from so many, is that they often will get back to their lives - especially since they have missed out on so much...

I think for some that get so sick, that they may not be receiving all of the help that they need. There are so many factors to treating Lyme, and if underlying issues, that were there before getting infected are not addressed, those too get much much worse with the infection...

This is a full body, multi-system disease, therefore, especially for those who are chronic, must treat mind body and soul...and quite frankly there arent too many docs that know how to do this as a whole...

And treatment of Chronic Lyme & Co-infections is still a major learning experience...I can remember back in 91 it was starting with just abx, then while after the docs added certain supplements...

ANd it was often suggested because SOME were seeing results with this or that...eventually over the years (12 years with conventional treatment) it was - dietary changes were necessary too...

So many of these docs are learning from various sources - including patients - what different things work for different people...and as they see success, the look into it themselves...Its a constant learning process...

No, I have yet to reach remission - altho within this past year, I honestly think I would have gotten there, if I didnt get as sick as I did this past May...

Yet, I am still doing much better treating the way that I am as compared to more conventional methods...

But the thing that you have to remember, is that getting into this frame of mind, will most certainly hold you back. You cannot compare yourself to others. Because there could be a whole host of things going on with them, that their docs are not picking up on and that could be why they are not getting better...

I love my LLMD - yet I keep insisting to my mother that she NEEDS to take herself and my sisters to another doc - one who practices some alt methods to see if there are underlying things that are being missed...because based on there lack of progress, it only makes sense that other things are running interference...

Also, keep in mind that not all docs will approach co-infections aggressively...and some wont even address reactivated viruses at all - because nothing really does all that much against them. Anti-virals only slow them down.

So you have to remind yourself that the number of reasons for others who have this so bad are not getting better, are not necessarily the same reasons for your situation.

Now I know that not everyone feels the same as I do about diet and nutritional support - which is fine - but I do feel that for the more chronic cases - this is going to be KEY to getting better...

And getting better when you are this sick comes in stages. There is very very rarely a dramatic turn around. This disease alone is able to penetrate deep into the tissue - and be hard for both the immune system and abx to get to.

You HAVE to make every ounce of your body inhospitible to these diseases - and we can only do that by getting back to our basic physiology - get back to how our bodies were designed to function...and that begins with diet and nutrition...

Also, you have to consider the genetic factors too. With each generation, we either grow stronger or weaker...and for those of us who have genetic predisposition to certain types of things, it makes us that much more susceptible to diseases like these...

You have to find the path that fits you - as a whole...one that works for your body, eases your mind, and strengthens your soul. Use the stories and examples of others as information yes - but not as a guideline...there are no true guidelines for this disease...

I have heard people profess that they were "cured" but Coloidal Silver, Cat's Claw, Abx...this or that...and run around trying to tell everyone they can that these things will cure you...my simple response for them is - I tried it and it stopped working for me...

I have always plateaued on abx, cat's claw/samento, and coloidal silver...so why them and not me...

Of course I have never been given and answer that really explained - I was just blamed for not doing it right...Yea - whatever...

So I have gone back to the basics and have had incredible progress...but unfortunately, my immune system has not had enough time to grow strong enough to fight off colds, flus and other garbage...Its growing stronger - sure - and is able to deal with what I already have - but cannot take on an extra workload...

And this is normal...so I dont get down about it - i stick with it...and I help it along with other supplements...and it is working...

Another part of getting better - and I have proven this to myself...is mental attitude. I have suffered massive depression, which after years of trying all sorts of things, I learned/taught myself to beat it on my own...

You have to gain an understanding of the brain. It will keep you in a negative cycle that will keep you sick. You have to learn to pick up and come out of it...no matter how bad things get...if you keep your mind focused on the prize...getting better...

Learning to deal with the pain in a more productive way too. Our initial response to pain - which is TOTALLY normal - is a flight or fight response...which ultimately is FILLED with negative reactions/emotions...growing tense, fearful, angry, frustration...etc...we clench and fight the pain...

These all cause a certain type of chemical reactions in our brains that are not conducive to getting better or coping in a more productive manner...

Learning to accept that this is going to be a long fight - that you are in it for the long haul is VERY important. Learning to accept that you are going to experience things and pains that are seemingly unbearable is also important. That this disease is unpredictable, and is going to throw all it can at you...you need to learn to accept it...

Acceptance is NOT admitting defeat. Its a process of facing your enemy, and understanding what that adversary is capable of...and allows you to develop and alter your game plan - as you need to...

It allows you to say..."Oh shit - Here we go again...OK, relax, breath, calm down...this too shall pass..." Let it ride itself out...take note of what you experience, and then formulate a plan for when it happens again...

This is by no means easy - we ALWAYS have to work at it...I am very very good at doing this...but I still have my episodes...Just had probably one of the worst ones of my life Sunday night...

I cant remember every fighting so hard for control over my panic and fear...I literally felt as if I was being crushed from both the front and back...as the panic would start to set in - it was literally a matter of Talking to myself...

"Stop. You know that you are not dying. You know that you are not hurt. YOU KNOW this is your NERVES running crazy." I took my meds, and waited. Laid on the floor and waited...

Eventually it calmed down enough to go to bed - after which it felt like I was being randomly poked with a cattle prode...BUT I refused to give that Pain POWER over me...

There are very few episodes that I can recall over the years that equaled Sunday night...but I lived through it. And have started a new plan to deal with it...

Treating this disease is like a fighting a long hard war...we are going to loose some of the battles - but we are the thinking organism in this - which means we have the ability to continue to try and find new methods of attack...

These diseases have to either admit defeat - or in the case of Lyme specifically - die and adapt...

Eventually, if we can reach better, then a bit more better, then recovered, followed by remission...could there be cure...I cant answer that...but if we keep our bodies armed with the tools that it needs to remain healthy...

Those buggers typically will stay quiet...but we must never forget them, because accidents do happen...and they are opportunistic...

So we learn to live with it...and we can learn to control it...but we must master how we control ourselves...and that in itself is tiring and at times a pain in the ass...

I know that this is very hard for you...but you can get better...it is possible...we all can...we just need to keep working at it - no matter how many times we fall - we need to pick ourselves - and at times each other up...and move forward...

Hang in there hun...

Christine


02/16/2010 04:40 PM
lishjolene
lishjolene  
Posts: 145
Member

sigh~ i just wish i didn't have to get better.. i wish i could just BE better! i'm sure we all wish that!!!

the unknowing is hard! my lyme went in to a remission one time for 1 year, but i didn't know i had lyme at that time!

its wasn't until the second time i got super sick i found out it was lyme (just this Nov).

i believe what set it off for the second time.. was a series of events that happened that year i lost my dog in june, my horse in aug..

by nov. i was starting to feel ill again. then in dec i lost a good friend.. my body was stressed and the lyme took over again Sad..

this is just my theory of what might have relapes it. if stress can do it 2008 was a stressful year for me!

but again i had no idea i had lymes in the 1st place i thought it was celiac sprue. the GF diet got me better! for that one year i did feel good i felt great!

but i forget what that feel like now. i can't wait to feel it agian! or hey maybe i didn't have in 2005 when i was told about the celiac.

maybe i got it in 2008 when i was feeling ill agian. maybe i truely have both and got them a differant times.. i guess i'll never know!

i just want to know i have a chance at getting better!

i do have alot of co infection too! plus i have sytemic candida. sigh~

***********

jolene, i broke this one up for you too since you said your system isn't accepting hitting enter twice for paragraphs; it posts 1 LONG paragraphs regardless. Smile betty

Post edited by: Bettyg, at: 02/17/2010 10:39 AM


02/17/2010 06:01 AM
jaime1978
jaime1978  
Posts: 2399
VIP Member
I'm an Advocate

truth, yes, people can and DO get better. I've been around long enough, talked to enough people, done enough research, I see it all the time. I've seen people get well on conventional treatment alone, on natural treatment alone, and a combo of the two...

I think the key is to treat this as a lifestyle change. While treating the lyme, you also want to be making steps to change your lifestyle, ie eating better to help your body in the future, taking the right supplements, exercise,and I think detoxing is a huge key, we're bombarded every day with so many toxins without lyme even being in the picture, etc etc.

bottom line, YES it IS possible for people to get well, and I've seen it happen.

Smile

hugs

j


02/17/2010 10:43 AM
Bettyg
 
Posts: 32276
VIP Member
I'm an Advocate

jolene, so sorry for all you are going thru.

FEAR OF THE UNKNOWN is what bothers us all the worst; not knowing what we have; how long we've had it; and what meds will help get rid of this to get us into REMISSION.

yes, there have been deaths from lyme disease, and it isn't always the heart causing this.

melanie reber started a wonderful site in memory of all we have lost, plus she has STATISTICS GALORE FOR ALL 50 STATES to help educate our politicians, drs, and everyone. check it out ok.

www.lymememorial.org

you've been given good advise for all above. work on meditating to relax your body; stress is our worst enemy.

sorry for all your losses last year: animals & your best friend. hugs/kisses bettyg, iowa


02/17/2010 10:53 AM
Julie4848

Yes you can get better, I'm here to tell you that...I'm 99.9% better then almost three years ago. Cured, not sure, in remission HECK YES..

Lyme can take time and sometimes lots of it...It took me over a year to get well (mine was caught very early) that year was hell on wheels for me and I felt the same way you did...

Please know you will get better, give this time and never give up the hope.

Julie


02/18/2010 03:33 AM
Piccoli
Posts: 46
Member

So here I am, 5 in the morning, can't sleep so I may as well give my input to this as well.

I just did about 7 months of anti-biotics (finished in September), starting with doxy and ending with some pretty harsh stuff. I feel worse than when I started so I guess I feel kind of the same way as you, wishing and wondering why I don't feel better. I also have been on an intense gluten and dairy free diet for about 3 and a half years now as well as huge amounts of supplements and anti-depressants/anti-anxiety and nothing has seemed to do much for me.

I think I am questioning if I even have Lyme in the first place, but my iGenex test came back positive multiple times so who knows. So now I am just kind of waiting here, wondering where to go next and what to do in the meantime. I just wish that through all of the stuff I have done, that there was some kind of benefit somewhere in there, I would take even like a 5% increase in energy, but so far there doesn't seem to have been. Hopefully it will happen in the future.

Sorry that was more of a rant than anything, but saying any of this kind of stuff to my friends or family results in some puzzled looks.

That's just my individual situation. The results for treatment for Lyme vary so greatly it seems, you can't say for sure what is or isn't going to happen.

Anyhow, I think I have seen some people recover pretty well (remission), including many people from these boards, so there is still hope for you.

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